Dural AV Fistula - Post Op (info desperately needed)

Hi. I’m very new here, so I apologize if I’m posting this in the wrong area. On Jan 2nd, I had embolization surgery performed on my dural av fistula. Since then, I’ve had minor headaches most of the time. I’ve looked all over the internet, but it’s difficult to find answers to my questions. I’m hoping that someone here can help me. I understand that people’s experiences are different, but I’m very scared and I’m anxious to learn as much as I can about what to expect. Here are my nagging questions…

  1. Are these post op headaches normal? Do people tend to have headaches like this after a successful surgery? If so, how long might they last? Weeks? Months? Could these headaches be permanent? They’re usually fairly minor, but the fear of not knowing if this is normal, is what’s really getting to me.

  2. Assuming that the DAVF is cured, can the patient still live a long life? Is this one of those things that shortens the patient’s lifespan, or (again, assuming it’s cured) can I basically move on and live to be a ripe old age?

  3. I know that I’m not supposed to workout or strain myself too hard, but for how long? I have zero idea on what a standard recovery time might look like. Weeks? Many years?

The other night, my headache was worse than normal and so I went to the hospital. I live in a very small town, so there were no doctors who specialize in this stuff there. They gave me a CT scan and sent the scan to another city so a specialist could look it over and send a message to the local doctors at my hospital. Apparently they found nothing concerning and sent me home, which is good, but I’m still desperate for answers to my questions. Any info would mean SO much to me. Thank you so much.

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@Tarol
Hello and Welcome to the group. I too have a DAVF on my left side of my brain. I did have a massive stroke 7 months prior to my DAVF which did cause brain pain. But after my angio/embolism I did have additional painful headaches around my occipital lobes and esp my left temple. The left temple pain is gone and I still do have some left side occipital pain even though my DAVF is sealed. Kinda feels like someone is pulling my hair. Botox shots have helped my stroke and DAVF pain which it takes the edge of it but Its almost 7 years.
As far as I know we can live a long life after DAVF - I do still get scans MRAs MRVs - not sure why they did a CT scan for your recent head pain. If you are experiencing any new head pain you do need to go get it checked out and they really should be doing the MRAs and MRVs- Hugs- I know for me I am uber aware of any changes in my body since and always tell my husband and if I have new pain I call my stroke dr or go to ER
hugs
Angela

Welcome Tarol, great that you joined us. I see you are from BC, I’m in Manitoba but originally from the east coast, and have lived a number of different places. I have an AVM and have had gamma knife so quite different than your situation. I would start getting a list of questions together and try to get in to see the surgeon, sure wouldn’t want to do anything that sets you back. Sorry couldn’t be more help, but once again welcome. John.

Thank you so much for the info, Angela. I’m sorry to hear that you too, are having headache issues. I’m hoping that my health with continue to improve and that this isn’t my new ‘normal’.

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Thanks JD12. It’s surprisingly difficult to talk to a neurosurgeon. I went and saw my family doctor, who left a message for my neurosurgeon, but the surgeon never called back. I have another angoigram scheduled for Jan 31st, so I’ll be able to question him then, at least.

Tarol

Hi and welcome to the family!

I’ve got a dural AV fistula in my right occipital. I would say I felt imperfect for at least 2-3 week’s post embolisation and I think I was on paracetamol for a couple of weeks. I had quite a diversion of blood going on and the doc told me that it would take a lot longer for my brain to get used to the new pressures that were now flowing.

I had an angiogram about 7-8 week’s post embolisation. I assume you will also have a check to make sure all was done. In my case, the doc was borderline whether he would block up all of it in one sitting or not.

Since my embo, it has taken a long time to get better. From April to September, I’d say I was getting better each month. In Oct and Nov I felt I was slipping backwards and I’ve gone back to the doc to ask if everything is still ok. Unfortunately, I’m in a queue to answer that and my appointment is in March coming!!

When I had my re-scan in May, the doc just encouraged me to resume life as normal. I absolutely believe, if the thing is properly blocked off, that you’re back to having the same prospects as anyone else without an AVM. I do think we can think about and worry about our AVMs too much and we are better to forget about them and crack on with life as normal once they are fixed.

Obviously, that isn’t always possible, as some people have damage that their AVM caused or effects which couldn’t be resolved by the surgery or other intervention. I don’t think we should ever expect to be back to 100% health – surgery of any kind is always a bit of a compromise – but many people who haven’t had a bleed get back to a good state.

So… I’d say don’t panic about it. Despite being only glue or coils or whatever, the radiologist or neuro has been messing with your brain and less than 2 weeks post event is very early. If you get any severe or sudden degradation, definitely go back / get to the emergency room if appropriate, but otherwise, try to relax, take some pain meds and ask the doc about when will be appropriate for a review.

Does that help set a bit of context?

Hope it helps a bit. Best wishes,

Richard

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Link to my progress in April…

Tarol,

Thought I’d ask about you again, now that you’re a bit further down the line. How are you doing? I hope you’re getting a bit better month by month, or feel noticeably better.

:crossed_fingers::crossed_fingers:

Richard

HI Tarol
Halfmoon Bay, huh? Isn’t that on the Sunshine Coast? I live in Campbell River on northern Vancouver Island and I had my coil embolization (dural fistula which bled) done in January 2016 at Vancouver General. I don’t think this is ever over and every new twinge has me thinking the worst. I was just back in VGH after suffering from terrible dizzy spells. The local ER did a CAT scan which was useless so back to VGH, my neurosurgeon and an angio. I was given the all clear but really that’s the only reliable test (or MRI) to check for changes. Now they have decided I have vertigo. The dizziness has now passed and I await the next problem to have checked. And so it goes. Don’t mess around with the little guys…I learned that the hard way and it almost killed me. Now I go straight to the neurosurgeon. And he doesn’t mind. Maybe give it some time.

My DAVFwas not eliminated after (2) Onyx glueings & Gamma Knife treatment. It has been two years since the Gamma & my angiogram revealed (2) small & (2) large feeders. They called it a
malignant situation. Going back for more Oynx glueing. I hope it works. Very upset & worried. Ann Griffin